The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here.

I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.

With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.

I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.

My next post is about The Matchbox Theory which I think is actually a little more apt.

Weight Gain

Over the last few months, my mental health has not necessarily been the greatest.

Motivation has been down, so getting to do things that aren’t scheduled has been a challenge.

Fatigue has been high, so having the energy to do even the things that are scheduled has been a challenge. I should follow up with my doctor to ensure it’s not just the fibro cuz it’s been more as of late & I am getting my B12 shots done regularly now.

Pain has been escalating. It hasn’t been high enough to warrant a visit to the ER, but it is higher than it was before Christmas. It’s usually been muscular pain in my leggs, sciatica pain in my lower back or just plan old headaches or migraines (a bit of both). Pain doc can’t help with the first or last beyond medications, and I’ve been getting epidurals for the sciatica. Unfortunately my back popped a month or so ago, so the epi hasn’t been as effective (yes, I’m following up with my GP on that when they return my call)

Comfort food has been the go to lately, most of which has not been healthy. Junk food, cookies mostly leftover from Christmas, candy, chips, etc . Not the best choices.

The accumulation of all these factors has resulted in significant weight gain..

Allodynia

Allodynia – That’s the technical term for feeling your skin 24/7. My skin is so sensitive that a gentle breeze can trigger a pain response on a bad day. Pants are torture, but skirts are worse. I hate leggings because they make me constantly aware of my skin. Which I assure you is not nearly as much fun as it sounds.

A quick anatomy lesson for the integumentary system (hair, nails, skin and sweat glands) your skin is by far the largest organ you have. It’s not just a meat sack holding your body together. There are billions of nerve receptors in your skin. They are designed to bypass the rational mind and are hardwired into your subconscious or reflexive mind. This is why you move your hand away from the flame before you even realize you’re burning. There are about 2 billion or so nerve endings in the outermost layer of skin. More in the under layers, the hair, sweat glands etc. They are there to alert us to potential danger and to alert the brain that we have been damaged.

You have different nerve receptors for different things. Some are ticklish. Some detect change in Temperature. Some itch. And some say OUCH!

Now imagine if something happened and suddenly all of the receptors start telling your brain OUCH. Meaning that breeze causes pain, the brush of your hair across your skin causes pain, warmth/cold causes pain. Sound vibrations caues pain. Clearly this is a problem with the wiring. But they don’t know what it’s caused by.

When my skin hurts I don’t want delicate gentle touch, I want specific, firm and with intention touch. I want clear and obvious sensation (think stingy and thuddy rather than feathery or ticklish)

Author – Unknown.

– – –

I do get this myself. Mine is thankfully on & off . Like the OP, I prefer firm contact, but I also need to know it’s coming. It’s easier to just have no contact at all tbh.

It’s weird. If I’m sensitive with this, a hair that falls out of my head & lazily makes its way down my back or my arm can be excruciating at worst, mildly painful at best.

I even have a “Don’t Touch Koolaid” Necker for Cubs. Meaning they know they can not touch me when I’m wearing it. They don’t understand why – just that it hurts me alot if they do on those days. Fortunately, I don’t have to wear it often

Christmas Cookies

Every year for Christmas, I bake cookies to give to friends and family for gifts. To make it easy on myself, I buy some of the dough pre-made. This also allows for a little more variety than if I just made six batches of peanut butter cookies or sugar cookies.

I tried something different this year. Yes, I still bought the pre-mix dough and I also still mixed up some dough. What was different this year is that I only baked the cookies that I needed as I needed them. Previous years I would bake all the cookies and then freezing them all.

While this does take more time, it has been spread out over multiple days. It limits doing repetitive and eventually very painful actions for hours & hours on end. Plus, I’m also not spending one day constantly baking

The other benefit is that for most people, the cookies are fresh – straight from the oven almost in most cases..

Unfortunately, I did not see my brother’s family this year due to a really bad storm the day before our family dinner. He was still digging out with intermittent power. His eldest god to school near me, so I will send the family’s cookies home with her after the holiday break. Until then, they are frozen cuz dough only remains good for a limited period of time.

The only other ones that were baked & frozen were the gluten free ones for my neice’s & SiL’s gluten intolerances. That was done for two reasons. First to ensure that all the gluten-free products were baked on a gluten-free surface and not switching between gluten-free and regular cookies. Second to keep all the gluten-free cookies together. I didn’t want to get them mixed up.

Pill Bottles

What really sucks is when your hands are too sore to open your container for you pain medication

Trifecta to Being Productive

I find there are three health benefits of being productive. I’m not necessarily talking about cleaning the whole house or an equally large activity. Even something smaller like getting X amount of laundry or dishes done. Something manageable but productive but nothing that is too much.

After getting something done & done well, I feel three things:

1. More awake and alert
2. More energetic
3. Less pain

Additionally, I feel better about myself and accomplished as I’ve set a realistic goal & reached it.

Cub Camp – The Aftermath

So I did do cub camp I wasn’t feeling great, but I ended up doing it. The kids had a blast I’m still recovering.

So, as you can see, it was a very physical weekend. Both Jenn & Wendy are runners & Cecile is one of my other Cub leaders. And I out paced them all. I I am still recovering.

I am hurting I am reeling. I have been physically sick. I am exhausted. I am mentally unwell. I don’t know if I can do this again. I don’t even know if I can camp at all again.

I dont know if I want to.

How Is Fibro Reliable

The are only two reliable things about Fibromyalgia and chronic pain in general

1. Our bodies are pretty much always in pain. All day, every day we are in pain to some extent. I don’t think I’ve had a pain-free day, other than heavily medicated, in at least 2 decades.
2. Our bodies are reliably unreliable in regards to this disease. Consistently inconsistent.

Pain Levels Change

These change, frequently. They ebb & flow.. We can from a 2/10 one day, but the next a 5,/10, then a 3 then a 6,.. Even worse, they can shift hour by hour, especially when it bounces. Goes 5 to 6 to 5 to 6 to 5 to 4 and to screw me up, back up through 5 to 6 again.. Some of our pain is predictable by pattern like weather changes & over exertion, but not even necessarily then..

Now, jumping at lower levels like 1, 2, 3, or even 4 aren’t so bad.. but bouncing at the higher levels is alot harder on the body .

Duration Changes

The shifts in our pain levels can bounce from hour to hour.. They can be sustained for a period of time. Sometimes hours, days, even weeks.. I’ve even stayed steady at a 3 level pain level steady for months at a time. And I have seen no way to predict how long it will last I’ve had the same thing cause a shift and each time the shift (be it up or down) has lasted different lengths of time.

Frequency Changes

Our pain levels, as you can tell from comments above can last a different length of time each time. Sometimes minutes (but that’s usually an outside source!), Hours, days, weeks & as mentioned even months.

Triggers Change

I’ve noticed that sometimes I will get triggered by an activity one time, but not the next. On the reverse, something else that doesn’t normally trigger me will. Inconsistency. Shifts in the weather are a good example. We recently shifted to rain at the end of last week and I got hit hard for a bit, up to a 6, but slowly was able to manage it back down. But the inverse, the week prior we got hit with a similar shift to rain, but there was very little impact to my body.

Timing Changes.

When our pain will change is in no way predictable. Since childhood, I’ve had a tendancy to be better or healthier in the evenings. It’s to do with my circadian rhythms, I think but everyone has that Other than that, time of day has very little impact. There are days where I will suddenly wake in excruciating pain because of the pain. There are days where I will wake naturally & when I make that first move, Whammo! There are days when suddenly, mid-day, pain shoots up. There are days where I woke well and by the time dinner rolls around, I already want to curl up and ignore the world to deal with how bad I feel.

A Side Note – Third Consistency.

In writing this entry I keep noticing that the reference to changes emphasized to the increase. That’s probably because the increase is bad. But I also noticed that I’ve never had the thought, as I’m writing & editing about sharp drops in pain.

3. Pain can rise quickly, but without intervention, it always drops slowly

MRI’s Suck

Last Thursday & Friday (yes, Good Friday) I had an MRI both mornings. And it was not good.

For those who are unfamiliar with MRI’s, the machine is basically a tube, looking kinda like a doughnut. It has a bed attached to slide the patient in. How you go in & how far in you go, varies depending on what the scan is for. Mine are for my brain so I go in head first, as far in as my elbows . Alternatively, you can go in feet first and I have found out that they have a smaller sleeve kind of version for arms.

My fibro was flaring something fierce and had been since the Sunday prior. I know the MRI machine dors jostle to adjust for the scans, but I’ve never felt like this! Every time the bed was adjusted it was a fast start & a fast stop immediately after. It was very jarring on the body. The fibro pain was excruciating! Add the pain in my left arm from the scar tissue breaking up from my RMT (more coming), and I was almost out for f my mind. And I couldn’t even move my arms because that could cause the scan to blur which could lead to to inconclusive results and a repeat scan.

Add to this situation my claustrophobia, a fear of small spaces. On Thursday, the only thing that has kept me sane and kept me somewhat still, was slow deep breaths through the entire time. Even through each and every shift in the bed. I’m not sure I was able to keep myself motionless sufficently for a clear enough image. On Friday, I was smarter and remembered to take the lorazepam I had so I could quiet my mind while in the machine. That helped keep me more calm and helped relax my muscles. This made my fibro chill out and actually helped decrease the pain. I also was smart and lay my arms in a more relaxed and comfortable position before going in. The movement of the bed adjusting was still very jarring on the body, but with the breathing I was able to cope better.

When I got home, I went straight to bed to catch up on sleep and the lorazepam was really starting to knocking me out.

Results are still pending.

Pain Is Up!

i had originally scheduled a different post with the same title.. One that should have posted in December, but some of it isn’t relevant anymore, and I’m in a different place, so I am changing it..

Why? Cuz for the first time in years my pain is at a 7/10.. Keep in mind, I picture 20/10 to be the equivalent of having my limbs cut off with a full chainsaw without the benefit of anesthesia or passing out from the pain.

Whats making it worse, is I had an epidural a few weeks back, so my lower back & my pain due to Osteoarthritis is pretty much non-existent. That means, I have fibro pain & *just* fibro pain at a 7/10. Normally when I hit a 7, it’s a combo of fibro & OA. When that happens, if I can dull out the OA pain, I can deal with the fibro.

^{Pain Scale 7/10}

So, its *all* fibro pain & last night I was almost in tears, even with extra (Double) muscle relaxers & narcotics – even a good chunk of alcohol. So there’s not much more that can be done for it, and *nothing* they will do in Emerg to help. They won’t given me any meds stronger than what I am on. Narcotics or a muscle relaxer.

When I do visit the ER, I typically get a toradol shot & a Xanax. Tonight that won’t do anything to help.

The only good thing is that I see my pain doc. Honestly, not sure my shots are even going to help I expect she’s going to recommend a lidocaine infusion, the one treatment I’ve not tried. I think I’m going to say yes this time.

Why so much pain?

Simple, if you read my previous post about CBD, you’ll know my GP thinks it’s my medical marijuana. So I’ve been off the MMJ since February 17th. While not as bad, I’m still nauseated and I am still throwing up. I’ve been on this medication for about 4 years now & it was a huge help getting me off fentanyl..

Due to the extreme bruising, he, my GP, also yanked me off the arthrotec, an anti-inflammatory, a few weeks before that. But I still bruising.. I have been on this medication for decades, since my mid 20s…

So I’ve lost two of my treatments that were helping my fibro, but do not seem to be resolving the problems I took to him.

As a result my pain has been slowly creaping up & I’m experiencing allodynia again. Basically, it is a sensitivity to touch. See next week’s post for more about this & how it’s been impacting me..